Hi Everyone, Has anyone gotten a medical bracelet? If so, what would be best to have engraved on it? Other than the name of the syndrome, would it be advisable to indicate instructions for the recruitment phase? Thanks, Ann

Ann, I looked into that but found it was easier to have a medical alert app on my iPhone. I can list all my meds, allergies and info about SCLS. I also carry a binder with copies of my medical records from all my hospital stays along with blood work. t includes print outs from this site concerning SCLS and what medical staff need to know during an event. Hope that helps. ...Donn

Thanks Donn, that's very helpful. I have put together an envelope of materials about the syndrome for our cars, but including hospital records is a great idea. The binder idea is much better to hold all if that. Also the iphone app...what is the name of the app u have? Thanks, Ann

Also Donn, are u on IVIG?

Ann, I use an app called Emergency Info + I am receiving IVIG therapy. I began a year ago and having great results. No episodes or symptoms and my energy level is so much better now. I highly recommend it if you can get it. The only issue I have is that I will have to continue my infusions every 4 weeks for the rest of my life and that is going to put a a wrinkle in my plans to sail around the world! :-) ...Donn

I think you're just going to have to hire an ivig nurse to go on that sailing trip with you! We started the ball rolling today with a visit to our family doc. He will be contacting immunologists at our university hospital as Arturo has suggested, someone who knows about SCLS or is willing to take my case & pursue IVIG treatment. Thanks for all your help! Ann

Good luck Ann! Be sure to take all of your SCLS research material & any blood test results with you. I found that most physicians don't have clue about SCLS. My episodes have enlightened many of our local doctors. ...Donn

Hi Ann. If you do go with a medic alert bracelet, may I suggest you put "Systemic Capillary Leak Syndrome" on it rather than "Clarkson's Syndrome". That way, if you are in an emergency situation and can't speak for yourself, at least the ER/ICU staff will know capillary leak is involved. They will still need to look it up and do some research, but the word Clarkson's won't even give them that vital clue.

Thanks so much Josephite...that makes sense. Do you have a bracelet?

I had and wore a bracelet the first two years after my 1st episode. It had "Systemic Capillary Leak Syndrome" and the name and phone numbers of the 2 doctors in the USA who knew anything about it in those days (2006-07). If you get one now, you can put the name/number of this community's medical advisors in the USA, Drs. Pecker and Druey, see Disorder Details. But we've come a long way by now, and I suggest that you always carry around the 2-page, 5-minute ICU consult on SCLS, which tells any ambulance medic, ER receptionist, or any other medical professional just what to do. I even laminated my own copy, and it's always in my briefcase -- even though I don't have episodes any more thanks to an IVIG therapy.

Thanks so much Arturo.

Hi Josephite, I just read your profile on behalf of your husband! I can't believe what your husband & you have been through. I'm so glad that he is on IVIG & I hope & pray that he will never have to go through another episode! Best regards, Ann

Hi Donn, Would you mind taking a few moments to tell me how you went about qualifying for your IVIG treatments? What kind of doctors you went to, if you had one particular one who acted as your advocate, how you got approval for insurance, & that sort of thing. And how long it took. Thank you, Ann

Thanks for your kind wishes Ann. It's been a rough couple of years, but having this community available helps us feel less alone (although we would never wish this on anyone). My husband has been episode free since starting IVIG in January. He does wear a medic alert necklace, but the most powerful tool is a letter our specialist wrote for us to give to ER staff. We've used it several times and it helps him get treatment in ER faster. Liesa

Ann, I am a Vet so I went through the VA program. When I saw a VA hematologist & supplied him with my medical records from all my local hospital stays. The VA stepped up and are giving me the IVIG therapy at no cost to me. I have to travel 21/2 hours each way pnce a month but it is well worth it. Good luck! ...Donn

On my son's bracelet, we put SCLS- Clarkson's Disease. That he was allergic to motrin. no iv bolus and my cell number. On my cell phone under ICE (in case of emergency) notes, I have that his mefical protocol is in my purse and his dad's wallet. I carry all his medical records in a binder in both my car and my husbands.

Thank you to Connor's Mommy. Will Connor be able to receive IVIG treatments? Can't imagine how difficult it must be for you with your precious little guy having to go through this. Blessings to you! Ann

Also, Donn, thank you for responding about your IVIG process. So glad the VA has come through for you. All the best! Ann

Ann, He is able to receive IVIG if we so choose. We are blessed and happy to report he has gone a year without an attack. Based on Dr advice, we will not change his protocol or medicine at this point. Should another attack occur, we will reevaluate.